臺灣精神障礙者手足照顧經驗之初探：以父母照顧經驗做對照

Preliminary study exploring the middle-age mental illness siblings’ caretaking experience in Taiwan: Caring experience compared between parent caregivers and sibling caretakers in families with severe mental illness

精神障礙者照顧經驗在實務工作與學術研究中多偏重父母、配偶或子女的照顧，也習慣服務與關懷直系血親，然而，有一群隱身的照顧者是精神障礙者的「手足」，關於他們的照顧經驗與研究相當有限，無法呈現精神障礙者手足照顧的特殊性，更無法區別辨識手足照顧者與父母照顧者的照顧經驗與投入程度之差異性。本研究採立意取樣，以質性研究方法訪問12 位精神障礙者手足照顧者，發現有三位受訪者表示父母與手足照顧經驗是一致的，表達兩者都是親人的照顧；有九位受訪者可以清楚對照父母與手足照顧的不同，基於關係與角色的差異、界線的取捨，最後回歸到當事人（手足）的感受，詮釋與分享手足照顧經驗。研究團隊從實務經驗與研究資料整理中，進一步論述中文直譯「照顧者」無法區分英文兩個名詞－－'caregiver'與'caretaker'，兩者定義之區別：前者為父母照顧的經驗，後者為手足照顧的經驗。研究發現，建議實務工作者對手足照顧者需具備不一樣的標準與期待，重新提供衛教內容，建立合作關係，建議政策應以多元服務照顧者為對象，落實照顧者的服務，同時，須更重視精神障礙者與照顧者雙重老化的議題，連結照顧連續性支持系統。

Social work practice and studies generally focus on the care giving experience of the parents, spouse, or children of people with severe mental illness. However, few studies explore a group of invisible group playing an important role in taking on the care giving responsibility, namely the siblings. Because the literature investigating siblings’ care giving experience is limited, the sibling caretakers cannot present the unique contribution to, and level of caring involvement with, their ill siblings, or how they differ from parent caregivers. This study employed a qualitative method, purposive sampling to investigate twelve participants. Three participants were found to have consistent care giving experience with their parents, due to the natural desire to provide care to any family members. Nine participants could differentiate their own care giving experiences from their parents’, based on the subjective perception of the role, relationship status and natural boundaries in the family system. Then we concluded by examining the self-perception of the interviewees, and interpreted their care giving experiences. Based on the collected data analysis and anecdotal experience, the definition of the caretaker and the caregiver differs: the former involves the care giving experience of siblings, and the latter deals with care provided by the parent. This study’s findings suggest that practitioners should have a variety of care giving expectations regarding the caregivers or caretakers, such as providing essential psychoeducation materials and building a work alliance. Moreover, the policymakers should focus on both caregivers and caretakers in seeking to provide the necessary social services, as well as to monitor the implementation. We should pay attention to the dual issues: caring for people with severe mental illness and collaborating with the continuum of care support system.